Tag Archives: Conditions and Diseases

Re-opening the World – 7Y2D COVID-19 Diaries Week 15

How has the easing of lockdown affected you and your family? Have you gone back to life as it was pre-lockdown, are you still following strict social distancing or shielding rules, or are you slowly working towards finding your feet in your new normal?

The last few days have been interesting ones for me as I’ve started to receive phone-calls from local services and businesses as they begin to re-open their doors and are keen to get people in after months of self-isolation. I’m sure there are those that will think I’m being overly cautious, but my answer to each of those enquiries has been simple: thank you, but no thank you, not at the moment. Having strictly restricted my movements over the last 15 weeks, I’m not in any rush to get back to the way things were before lockdown happened and will be keenly watching to see what happens over the next few weeks, particularly as pubs and restaurants reopen this weekend as well as some other businesses.

We’ve also been prepping to make sure we have everything we need as we do start to move towards relaxing our own version of lockdown. Despite the reluctance of the UK government to mandate the wearing of face masks or coverings when out and about in England, we have discussed the importance of them with G and M and agreed that the whole family will be wearing them once we start to venture further afield. Mike is already wearing a mask daily as he travels for his work and M has independently decided that he will wear his when he goes into school next week for an hour-long “keeping in touch” session before the end of the school year.

Both children had input into the face masks that they wanted to have and are happy to wear them when needed. We knew that having their buy-in was important, not least because there is a requirement to wear them when going into hospital for appointments and sooner or later that will be necessary for M and me, although we both currently have either telephone or video appointments booked for later this month.

Whatever your movements this weekend, be it to your local pub, restaurant or simply more staying at home, stay safe and keep well.

Easing Lockdown – 7Y2D COVID-19 Diaries Week 11

How things have changed in the last week in the UK. The government announced that we could start easing the lockdown measures that have been in place since the end of March, a decision that has received mixed reactions from across the country. Changes have been discussed at the daily briefings, or published via press releases late at night, and all too frequently there has not been sufficient detail or further explanations provided to give comfort to anyone expressing concern that maybe we’re moving ahead too quickly when considering current statistics.

As lockdown eases, I’m able to continue to work from home for the time being, which has been especially reassuring given the recent publication of scientific research into the risk of COVID-19 on those living with diabetes. We had all been advised that those living with underlying health conditions were at higher risk during the pandemic, but the evidence suggests a particular link with diabetes and other health factors, some of which are relevant to me, others that aren’t. I won’t be changing the way I’m working at the moment and continue to limit myself to being at home or out for a walk in the area surrounding our village, somewhere I haven’t left since lockdown began.

Both G and M continue with their homeschooling and it was confirmed just before half-term that neither of them will return to school before September at the earliest. We continue to balance school-work with other activities to keep them entertained during the day, but they are yearning to spend some time with friends, although they do understand why that just isn’t possible at the moment. Our old trampoline finally gave up the ghost with a number of springs popping off in the first few weeks of lockdown, but we managed to get an order in for a replacement one and M has been waiting eagerly for it to arrive. The delivery finally happened at the start of this week and the introduction of a 16 foot trampoline to our paddock is certainly a sight to see. G and M have already been out bouncing as much as they possibly can and it’s definitely big enough to accommodate them both at the same time.

The biggest change with the easing of lockdown is for Mike. Having been furloughed on 1 April, he has spent the last couple of months doing a number of DIY jobs around the house and garden, but that is now coming to an end as he starts back at work tomorrow. This has come with its own set of concerns, not least about how Mike can best protect himself to minimise the risk of him bringing COVID-19 home to either M or me. We have agreed a process whereby he will change in the garage as soon as he gets home from work, put his clothes straight into the washing machine and will then come in and go straight to the shower before coming into contact with the rest of us. He has also been provided with a supply of PPE to wear throughout his day as he travels between houses to complete surveys and valuations. Finally, as I have taken over his study for my home office, he will be using the desk in the spare bedroom for when he needs to work on his reports.

What does the lockdown easing mean for you and your family? Are you returning to your new version of “normal”, or taking a more cautious approach for the next few weeks? Whatever you’re doing, stay safe and keep well.

Awareness in Lockdown – 7Y2D COVID-19 Diaries Week 9

This week has been a focus for raising awareness for 2 causes close to our hearts: National Eosinophil Awareness Week (NEAW) and Mental Health Awareness Week (MHAW). It somehow feels apt that these two go hand-in-hand this week as we have so often experienced first-hand how closely linked life with EGID is with the mental health well-being of all in our family. This year that is even more important as so many of us are struggling with the changes that the coronavirus lockdown has brought with it and none more so than the young people in our household.

National Eosinophil Awareness Week: We have been very active in raising awareness about eosinophilic diseases for a number of years, but decided to start taking a step back from that last year. Eosinophilic Colitis (EC) was the initial diagnosis that we received for M all those years ago from his consultant at GOSH, but in recent times, the diagnosis criteria for this condition have faltered and existing diagnoses have been actively questioned by many within the medical community. These days conditions such as mast cell activation syndrome (MCAS) have been bandied about in relation to M, but ultimately the root cause of his health problems still remains a mystery to us all. As I’ve said so many times, having a name to put to his health issues has helped us all, even when very little is known about it, and I continue to use both his original diagnosis of EC and the newer one of MCAS when filling in paperwork or talking about M with other people.

Despite our own uncertainty about whether EGID is the correct diagnosis for M or not, I will always continue to encourage and support the fundraising and awareness-raising efforts of organisations seeking to research and understand this family of conditions more. Lockdown maybe stopping us doing anything active to raise awareness this week as we have in the past, but it’s good to be able to do my bit even from within the constraints of my own home.

Mental Health Awareness Week: Mental health well-being has been a buzz word in our household for a number of years and never has that been more important than now as we see the impact of 9 weeks in lockdown on us all. I’m a happy introvert, who enjoys spending time in my own company and so, in many ways, lockdown life is suiting me quite well. Regular contact with my work colleagues through Zoom and conference calls, webinars and online catch-ups with other friends is keeping me in touch with the outside world, which is especially important at a time when my T1D is keeping me at home.

However, I see a greater effect on Mike and the children and I think a lot of that is due to the changes to their daily routines. I am still working 9-5 every weekday, albeit from home and more often 8-7, but the 3 of them are going through a very different experience to me. Mike was furloughed from his job as a chartered surveyor on 1 April and for someone who is very used to being out and about as he values or surveys properties every day, the restriction of staying at home has been difficult. He is also much more of a social bug than I am, so not having daily face-to-face time with anyone other than the children and me has also taken its toll. However, that being said, the online capability to chat to family and friends across the world is something he has definitely embraced, even taking part in his regular whiskey-tasting evening via Zoom the other night!

As for the children, well G and M are almost a perfect reflection of Mike and me. G is comfortable entertaining herself and being in her own company, whereas M thrives on spending time with his peers as well as being constantly active and mentally challenged by them. Both have found lockdown difficult and we have worked, and continue to work, hard together to find the best outlet for their emotions as well as effective ways to meet their social needs. Chatting on WhatsApp or connecting via the PS4 has been a good solution and both are also having tutoring sessions via Zoom or MS Teams every week. This connection with people from outside of the family has been key to giving them something that is a very faint semblance of what they’re used to experiencing daily. Keeping them in a routine has also been important as Mike and I are very conscious that their return to school in September, after the best part of 6 months home-schooling, will exhaust them physically, mentally and emotionally from the minute they step through the school doors, if not before.

The buzzword for MHAW has been Kindness and considering what random acts of kindness you can do for others has been much encouraged. However, I think it’s key to remember that, whilst showing kindness to others in all situations is important, so is showing kindness to ourselves. We truly are living through extraordinary times and we shouldn’t feel guilty if we are not coping as well as we perhaps believe we should. Be that by taking some time to do something we love to do as an individual – bubble bath anyone? – or spending time relaxing with our family or even reaching out to a friend because we just need to talk, being kind to ourselves will improve our own well-being, which is something we all need right now.

Food Boxes – 7Y2D COVID-19 Diaries Week 8

One of the many things that have changed hugely during lockdown for everyone has been the process of buying food and this has been particularly challenging for those families living with food allergies. In the initial rush to panic buy the bare essentials – loo roll, pasta and flour to name but a few – those individuals who needed to buy freefrom foods found their usually more plentiful supplies being depleted by others who chose to buy allergy-friendly when their “normal” stocks ran out.

Thanks to my hoarding tendencies and the regular “big” shop that I do twice a month, we had enough safe milk, bread, flour and pasta to keep us going for several weeks and initially had no problems in buying more rice milk as that seemed to be the one dairy-free milk alternative that no-one else wanted. However, for a family who goes through around 40 litres of rice milk a month, the restrictions introduced where we could only buy 3 of any product proved to be a little more challenging in keeping our cupboards full. G and M have been brilliant at switching to drinking water, or occasionally squash, during the day, rather than the huge quantities of milk that they both prefer, which has certainly helped to eke out the supplies we have had at home.

Its been a case of not only trying to find the food you need and can eat, but also how you actually do your regular food shop. This has been especially true for our household as my T1D places me squarely on the clinically vulnerable list and as such, the advice has been clear that I should be staying at home. Fortunately for us, we already do a lot of our food shopping online, using our local food co-operative for our fresh fruit, veg and meat as well as Sainsburys and Ocado for our store cupboard essentials and, most importantly, the more specialised foods we need to keep G and M healthy and safe when they eat. The increased need for home delivery caused huge problems for many people at the start of the coronavirus crisis, but as we all settled into our new sense of normal, supermarkets and other food suppliers rose to the challenge of how to help more people in any way that they could and found a solution by introducing a variety of food boxes.

Now this will come as no surprise to anyone in the allergy community, but it took a little longer for these same organisations to realise that there was a whole group they were forgetting to cater for and now there’s a reasonable mix of freefrom boxes available too, though they do predominantly focus on the gluten-free market as far as I can see. We have ordered 3 different food boxes over the last few weeks and I thought I’d share our experience and opinion of each in turn:

Morrisons Food box (starting from £35) – one of the first food boxes to become available as far as I am aware and as the weeks have gone on, they have expanded their offering beyond the basic meat or vegetarian essentials boxes they started with. I ordered a meat essentials box, which arrived promptly and was well-packaged, including ice packs to keep the fresh produce chilled until I had time to put the food away. Our box contained, as it said, the essentials needed to keep us eating well: milk, bread, pitta breads, pasta, butter, cheese, meats, fruit, vegetables,tinned goods and the much-need pack of loo rolls were all included in it. Whilst it wasn’t the solution we needed in terms of safe foods for the children, it kept Mike and I going for another week at least and supplemented well what we already had in the house.

Marks and Spencer Food box (starting from £15) – with Easter coming so quickly after the start of lockdown, my Mum had managed to buy dairy- and soya-free chocolate for G and M, but apologised to me that she hadn’t had time to buy an Easter egg for me or Mike. Instead, she sent us a Marks & Spencer Fruit box and what a wonderful treat it was when it arrived. Again, it was a well-packaged delivery and contained a great variety of fruits to satisfy all tastes within the family. Whilst we order what I would term as our basic fruits every week (apples, bananas, oranges), the box also contained some more exotic fruits which, to put it simply, brightened my day. We received a plentiful supply of those regular fruits, which are always needed as we’re living with a 14 year old who lives for his regular smoothies and has a growing appetite at the moment, but I enjoyed the fresh mango and pineapple as part of my breakfast or lunch for a few days too.

Doves Farm Gluten-free Food box (£25) – this was an unexpected find, but a much welcome one. Surprisingly, I hadn’t seen anything mentioned about it through my usual allergy community social media platforms, but rather spotted it as a photo and post by an old friend on their FB feed. Discovering a box that not only catered amazingly for the gluten-free needs of our household, but also included 3 bags of safe flour was amazing and I couldn’t wait for this one to arrive on our doorstep. Add in the pancake batter mix, boxes of cereal and 8 delicious cereal bars that are safe for both children, there really was nothing to complain about. It was also great to find a new safe snack for M and I will definitely be looking to buy the apricot freee oat bars again.

Honing lifeskills – 7Y2D COVID-19 Diaries Week 5

One of the unexpected advantages of living in lockdown has been seeing G and M start to take on a little more responsibility at home and honing some important lifeskills to see them surviving when they hit adulthood. I started with expecting them to fend for themselves at lunchtime, avoiding too many snack-based choices and including some healthier options to ensure a relatively balanced meal and, after a first week of moans and groans about what they were eating for dinner, sat them down to meal plan their dinners for the following week. They had to work together on agreeing meals that they would both enjoy and, where a compromise couldn’t be reached, settling on something that would be similar, but different. An example of this was the great lasagne vs. macaroni cheese debate, as G dislikes the texture of lasagne, whilst M would choose to eat anything but macaroni cheese. They agreed to disagree and so have one night in the week where they eat their own preferred pasta option.

Whilst planning their menu for the week ahead, G and M also had to take into consideration what staples we had in the house and what would need to be added to our weekly food delivery. We have been using a local food co-operative for well over a decade for our fresh fruit, veg and meats and they have been great at continuing to provide their food delivery service during the coronavirus crisis. The natural next step from meal planning was to get them more involved with cooking dinner as well, building off the cookery lessons they’ve both had at school. They were already well-versed in prepping their own fruit and veg for a meal, but they can both now competently fully make some of the simpler meals as well as working alongside either Mike or me with the more complex ones.

G and M have an undeniable sweet tooth and the last few weeks have been a great opportunity for them to flex their baking muscles too. The interesting thing has been that they have worked both together and independently when it has come to choosing and making their sweet treats. The starting point has almost always been to see what recipes they can find on my blog and then checking if we have the ingredients in the kitchen cupboards. So far, we’ve enjoyed chocolate cookies, shortbread and carrot cake and I can’t wait to see what they whip up next.

The great thing is that G and M are not only learning to cook and bake, but they’re also honing their skills in following a recipe and realising when sometimes it might need to be tweaked slightly to make the perfect dish. They’ve discovered the benefits of menu planning and experienced the frustration of when a key ingredient is missing from the store cupboard and needing to think on their feet to find an alternative. They’ve learnt to really work together, to listen to and respect what the other is saying and, when a compromise can’t be found immediately, to walk away and give each other space. I think that they’ve also discovered that cooking and baking can bring a much-needed therapeutic release from the tensions that we’re all experiencing from living on top of each other in uncertain times and re-centre their sense of emotional and mental well-being.

“It’s school kids, but not as you know it” – 7Y2D COVID-19 Diaries Week 2

Two weeks into the UK-wide COVID-19 lockdown and we are all slowly adjusting to life as we currently know it. Everything was turned on its head a bit this week, when Mike was furloughed from his job in line with the government’s job retention scheme. This didn’t come as a particular surprise to us as so many businesses are having to consider carefully how they can best weather this storm, but it does mean that the dynamics in the house have changed as Mike adjusts to both life as a house-husband and the nuances of how I like my day to unfold when at work.

G and M are currently doing okay with the sudden and continued disruption to their daily routines, though the end of the week saw tempers fraying a little as they spend almost every waking moment in much closer proximity to each other than they’re used to and with no real end in sight. Our dining room has become their school room every morning until lunchtime, when they can then close the door on their virtual lessons for another day. Their school work is more challenging not just for both of them, but also for me as I try to juggle numerous conference calls, zoom meetings and my own workload with their needs of support and guidance with the work being set for them online.

G is capable of being reasonably independent with her learning and has faithfully put in 2-3 hours every morning on continuing her GCSE revision timetable. By the end of the week, school had added work plans to prepare the Year 11 students for their A-levels due to start in September, so, having asked me to buy the pyschology textbook for her, G will be beginning the introductory tasks set to prepare her for those courses.

M similarly is working really hard at the lessons and homework being set for him, but is inevitably finding the quantity of different notifications he receives overwhelming to cope with on a daily basis. We have talked about the best way for him to work through everything that has been set and agreed that a balance between those tasks with the earliest due date and those he’s most interested in is the best way to go. He is completing the online tests and either uploading or emailing his completed work for his teachers to check and review. I have been impressed with his attitude to approaching his school work and he is keen to not miss out on his learning by not completing what he needs to do.

Their afternoons are spent with a mix of outside exercise and some much-needed fresh air, alongside spending time on their electronic devices. There’s no question that they are spending more time in front of a screen than we would normally allow, but their phones, and even M’s PS4, have become invaluable tools for staying in touch with their friends. Whilst G is happy spending time on her own and exchanging occasional text messages with her closest friends, M very much misses the daily interaction with his school mates. A much-needed gaming session on Friday evening allowed

him time to catch up with a few of them and he was unquestionably happier for it.

I’m not really sure what week 3 will bring for us all. It’s technically the first week of the Easter holidays, but we’ve agreed to keep going with a few hours of schoolwork whilst we’re in the midst of this weird hybrid of school-holiday-home-life. I’ll still be “going to work”, though probably in Mike’s home office now that he’s on furlough and Mike will hopefully complete a few of those jobs that have been lingering on what my wonderful Canadian sister-in-law calls his “honey-do” list.

What does COVID-19 mean for you

I find myself in an odd position today. Torn between wanting to try and keep things as normal as possible with my blog posts about life as it is living with chronic illness; and the hard reality that is the current crisis with COVID-19. There is no question in my mind that COVID-19 is impacting all of us in a multitude of ways, so I thought I’d focus this post on what this virus means to us at 7Y2D HQ and how it is affecting each family member right now.

For the children, the biggest change has to be that they are both now home and won’t be at school for the foreseeable. Neither G or M are considered to be particularly high risk for the virus because of their age, but we know from personal experience that M is far more susceptible to catching bugs like this than his peers and his body can and will struggle to cope once he has it. His bout of Aussie ‘flu 2 years ago is too fresh in our memories to want to have to go through anything even vaguely similar again, so we are taking precautions and following the social distancing guidelines as recommended. I find myself once again so glad to live in the countryside and to have access to some beautiful and very quiet walks with little risk of encountering anyone else. We have ventured out both days over the past weekend to make sure we’re getting some much needed exercise and fresh air, and the children even practised a handful of their Stagecoach routines given their classes have all been cancelled.

School has been brilliant and the teachers are setting work to be done at home to make sure that pupils are not absent from all learning in the next few months. There were a few IT hiccups this morning as a large number of the 1300 students plus parents and teachers at school all attempted to access the online learning platform at the same time, but we got there in the end and I managed to print off some of the tasks set to make sure that M in particular has things to do in the coming weeks. His dyslexia centre is also setting up a system for online tutoring and so his 1 hour 1:1 tutoring sessions will restart after the Easter holidays, which is just brilliant.

The impact on G has been far greater. Her GCSEs have been cancelled and she has been told she has a guaranteed place at her school’s sixth form for September. She has also been told that she won’t be back at school until then. We’re really proud of G’s attitude to this as rather than sit back and relax over the coming months, she has instead determined to keep going with the comprehensive and individualised revision plan she was given by school just a couple of weeks ago and look to finish her learning that way. With more clarity still needed about exactly how her final GCSE grades will now be determined, I’ve encouraged her to keep going with the mock papers and practice questions and to submit them to her teachers, so that they have all the evidence they might need of the hard work she is continuing to put in each and every day.

G has also decided to learn BSL (British sign language) through an online course wonderfully being offered free of charge because of COVID-19 and has done her first lesson in that this morning. Learning sign language has been something she’s been interested in for a while and is an area she wishes to explore further as part of her A-level studies next year as she considers dance therapy and non-verbal communication as part of her possible future career plans. Not to be left out, and with a view to his yet-to-be-confirmed GCSE options, M has signed up for a 4-week online photography course which Mike has agreed to do alongside him. He received a digital camera for his birthday and we’re hoping this course, as well as the school enrichment week course he took last summer, will stand him in good stead for September.

My T1D has put me firmly in the ranks of those who are considered vulnerable and therefore at higher risk of both contracting the virus and complications arising from it. Diabetes is not currently on the list of those considered to be extremely vulnerable, which you can find here, and so the advice is to follow the social distancing guidelines, rather than to self-isolate. These days I work for a charity who provides social care and support to adults with learning disabilities, both in homes and in the community, which actually puts me into the key worker category as one of the back office workers needed to keep those services running. I am extremely fortunate therefore that my employer has been supportive of my own health requirements and has enabled me to work from home for not just the next 12 weeks, but for as long as considered necessary. Half of my team also fall into the category and so we are running the office on a skeleton staff basis and have been trialling meetings by both conference and video calls this morning.

Finally Mike, who is probably the easiest one of us all. He has no underlying health conditions that put him at higher risk, but he does have to be careful because of my and M’s chronic illnesses. He already works from home and has a home office set up with just about everything he needs. There will come a time when Mike’s workload will reduce significantly – it’s not quite there yet – as he is a building surveyor and the social distancing and self-isolation rules mean that people are less likely to want him and his colleagues to go into their homes. He is the most able to go out to the shops, although we already regularly shop online with Sainsburys, Ocado and our local food co-operative, so our shopping habits are unlikely to change much if at all, delivery slots permitting.

I hope that you are all finding a way to adapt and cope with this strange new world that is our current reality. I find myself waking each day and wondering about the very surreal situation we all now find ourselves in, not just in the UK but worldwide. This is an experience like no other and there is no doubt that life as we know it will never be the same again.

Stay safe, stay well, stay in touch – but most importantly, STAY AT HOME

Our Virgin Atlantic Experience

There’s been a lot of criticism across social media over the last few months about the attitude of Virgin Atlantic towards passengers with food allergies on their flights, in particular relating to those travelling with nut allergies. Now, I can’t comment on how they perform in those situations as we are fortunate to have no known nut allergies, though truthfully M hasn’t had a peanut in years, so we wouldn’t know if he is allergic or not. However, I was interested to see how they would do when it came to the allergy requirements of G and M, especially given our amazing experience when we flew with them to Florida in 2014.

Our first challenge was having some safe milk for M to drink for breakfast in the Heathrow airport lounge. Unlike the fantastic V-room at Gatwick, who stocked B-free bread for toast and brought in 2 cartons of rice milk just for M and G, the Heathrow lounge was less able to help and seemingly less willing to try, simply saying that their staff wouldn’t be able to bring the rice milk through security, so it was up to us to provide it if we could. I was extremely frustrated by this response when I received it, but rather than sit and moan about their inability to be as helpful as I would have liked, instead decided to contact M’s consultant at our local hospital to ask if he would write an updated medical letter stating that we needed to carry a number of safe food items through security for M. Less than 2 weeks after my request, 2 copies of that letter landed through our door and we were easily able to walk through security with the carton of rice milk in our hand luggage without issue once the letter had been seen. I always recommend carrying medical letters and copies of prescriptions when you travel and this experience proved once again, just how valuable that can be.

Despite that rocky start, I hoped things could only improve and as we had booked our complete holiday through Virgin, I had already asked that notes be added to our booking to state that both children had food allergies. I also updated our booking confirmation online with a request that G and M had the gluten-free meals and followed that up with an email noting that both also needed to be dairy-free if possible. I mentioned that M ideally needed to avoid egg and soya if it was at all possible, but knew this was a lot to ask and simply leaned on the truism that you never know what’s possible until you ask.

The meals that arrived with us for both flights were both gluten- and dairy-free, but included a couple of items for M that contained a small amount of egg. This time there was no mix up with meals going to the wrong seats and whilst the meals offered were not exactly what G would have chosen, M tucked in wherever he could. As always both of their backpacks, and mine, were well-stocked with some safe snacks to supplement what was provided and so we were able to muddle through quite successfully.

 

Our Virgin Atlantic experience is one that I would definitely count as a success and neither child, M in particular, suffered any fallout from what they ate on the flights. Not only were the cabin crew diligent with what snacks and drinks they offered to them, but they were also fantastic in helping us celebrate G’s 16th birthday for just a little bit longer and in great style, with a visit to the cockpit for both children on our flight to New York and a birthday present of some “lounge wear” (pyjamas to you and me) and some chocolate on the way home.

A Night of SeriousFun

It’s no secret that I absolutely love listening to our local radio station. It’s a great opportunity to hear about local people and stories as well as the national and international news. Sometimes I’m lucky enough to hear a friend or acquaintance being interviewed and I’ve even been on the radio 4 times speaking about M, G and the impact that his EGID diagnosis and restricted diet have had on our family. One of my favourite times to listen is in the morning, when the regular presenter hosts his phone-in on a wide variety of subjects from the sublime to the ridiculous and it was this morning’s topic that triggered my thoughts for today.

Today is World Children’s Day, a day to focus on children and more specifically, according to the UN, To recommit to putting children first. For every child, every right: the right to be a child, the right to play and the right to be safe.”

And this made me think.

It brought to mind an event that Mike and I attended in London last week, the annual gala dinner for the SeriousFun Network, the global family of camps for children with serious health challenges, their siblings and families. We were there to support Over The Wall, the charity that runs the incredible UK-based camps that both G and M have been fortunate to attend over the last few years. Those camps work hard to help those children who go to feel “normal”, often for the first time in their lives and to realise that they are not as isolated in their experiences as they so often can feel, whether as the child living with the chronic illness or as their sibling.

I’ve spoken so many times about the impact that OTW has had on both G and M since the first time they went and those effects are long-lasting. Friendships have grown with those they’ve met at camp and for G in particular, those same people have become her tribe. Time and distance has made no difference to those connections they’ve built and each camp sees them re-establishing their friendships from where they left off in years before.

The gala dinner was a great opportunity to celebrate the work that the SeriousFun Network camps do across the world. Much to Mike’s delight we were seated, purely by chance, with a group of Canadians connected to OTW through their corporate giving and they managed to spend half the evening talking all things ice hockey with great enthusiasm. It is thanks to individuals, groups and companies like these that OTW have managed to increase the number of campers they take each year and, having broken their target of 1,000 campers this year, have now got ambitions to reach 1,200 children in 2020. We were entertained by a variety of great acts including 2019 Britain’s Got Talent winners, Twist and Pulse, singers and musicians Damien Rice, Charlie Siem and Diane Birch and comedian Steve Coogan as well as a few of the SeriousFun campers who have performed at Stage Night at their respective camps.

It was a lovely evening, spent with people who all have the same goal to support and bring a touch of the usual to the lives of children who are anything but. We feel privileged that since 2016 our children have benefitted so much from the extraordinary efforts of the surprisingly small handful of staff members and the huge army of volunteers working for Over The Wall. In a reality where M’s health challenges have been an unwelcome, yet prevalent feature, it can never be underestimated just how much of a difference OTW has made to both G and M, and Mike and I are already planning to join the party again next year.

This truly is an organisation that has committed to putting children first and focuses on that right of each child to be a child, no matter what else life has thrown at them.

Hair today…

…and gone tomorrow!

It’s an old joke, I know, but it sums up perfectly the start of the new school year for G. For those of you who’ve been following me for a while, you may remember that 2 years ago G took the plunge and decided to cut her beautiful long hair for charity. She donated the hair itself to the Little Princess Trust, who use it to create real hair wigs for children who have lost their hair due to intensive medical treatments. G also took the opportunity to raise funds for Over The Wall and it turned into an impressive occasion, leaving her with a very grown-up hairstyle as well as raising £500, which was then match-funded to create a staggering £1,000 fundraising total.

Over the summer months, G has been talking once again about wanting to cut her hair – I think the hassle of combing numerous tangles and knots out of it had all become too much – and so at the end of her second day back at school, she headed to our local hair salon and once again braved the cut. Mike suggested to her that she consider donating to the Little Princess Trust once again and as soon as she realised that there was enough length to allow her to do it, there really was no stopping her.

This time round she’s gone a little shorter than before, but it’s still an absolutely stunning style for my fast growing-up firstborn. We are so proud that she didn’t think twice about making the donation and even more so when she said that she wants to continue to donate her lengthy locks whenever she can. To paraphrase G, she wants to “…donate my hair, just like Dad donates his blood” – a fantastic ambition and who are we to argue.